I urinate 60 times a day…I have virtually no sex, social or work life – The London Economic

I urinate 60 times a day…I have virtually no sex, social or work life

AbbeyPIC

By Abbey Haigh, 21

 

 

My problems all started just after I’d hit puberty, I was about 13 when I got my first urinary tract infection. In the beginning drinking lots of water and bearing the pain for a few days meant it would clear up for a while but over time the symptoms and the pain got worse.

Once I became sexually active I started to discover other problems for instance; pain and bleeding during and after intercourse and heavy periods. After many internal examinations, scans and ultrasounds and a lot of waiting time in between, I was diagnosed with Uterus Didelphys which means that I have two uteri, two cervix’s and one vagina with a septum which has now been surgically removed. Because of this discovery, investigations into the problems that I was having with recurrent urinary tract infections were side tracked and the doctors focused on removing the septum to eliminate as much discomfort during intercourse as possible.

I continued to get Urinary tract infections frequently and was prescribed one course of antibiotics after another, a lot of the time the doctor didn’t even ask for a urine sample as they could see I was in pain and having the exact same pain and discomfort as before. Sometimes when I did have urine samples sent to the lab however, the results showed that I had an increase of both white and red blood cells but no bacteria present. So my body was acting as if it was fighting a bacterial infection, even if there wasn’t one present. I did a lot of research by myself and was constantly suggesting to GP’s that I was sure I suffered with interstitial cystitis/ painful bladder syndrome but it is only recently at the age of 21 that a new doctor actually listened to me and referred me to a urologist who confirmed my suspicions with a cystoscopy, bladder distension and biopsies.

Since the cystoscopy I have suffered a huge flare up and the pain has been almost unbearable. I usually find that the pain is uncontrollable during a flare up, only subsiding after days of waiting and tolerating it as best I can, drinking plenty of water, taking a cocktail of painkillers and being very careful with my diet. I have gradually eliminated dairy, caffeine, sugary snacks, tomatoes and spicy foods. I only drink water and up until recently decaffeinated tea but I have cut that out too. During the night if I don’t wake up in time from a deep dream, there can be an accident and during the day if I can’t reach the toilet in time, which is why if I am out I always make sure I am within walking distance of a loo!

I have had to quit my job which has meant that I have no money coming in and it has left my partner to pay the rent and bills by himself on top of everything else. It has caused me to have depression in the past and more recently, since the problem seems to be a lot worse I have considered ending my own life because I don’t see a future without constant pain and discomfort. I am now taking Amitriptyline, Vesacare, Nefopam, Naproxen and Senna as well as Ibuprofen and Paracetamol. The drugs make me drowsy, nauseous, and dizzy and overall turn me into a zombie. Because of my excessive use of antibiotics I am now allergic to trimethoprim and find other antibiotics ineffective. I am looking into alternative medicine to offer me some sort of relief but I am certain that this is really no way for anyone to live.

I was hoping to start university in September as I have been offered a place to study Mental Health nursing but of course it is conditional and I am now doubtful that I will pass the medical assessment. I have no sex life, no social life, no work life and no income because my condition doesn’t even allow me to be entitled to any financial help in terms of benefits as it is not recognised as a disability, even though it has disabled me from my whole life.

For more information visit www.cobfoundation.org and advice line is 0121-702-0820

 

15 Responses

  1. Mary Dowds

    This could have been written by me a few months ago. Have you talked to your urologist about Cystistat instillations? I’m on them and they help to repair your bladder lining. Also, taking a supplement called Prelief is incredibly helpful to a lot of sufferers, it reduces the acid content in food. Good luck, I feel your pain (literally).

    1. Abbey Haigh

      Hi Mary, I have had one bladder instillation however I was sent to the wrong hospital by mistake and I’m now on another waiting list to receive them at my local hospital. I have no faith in doctors at all at the moment. I will definitely inquire about the Prelief. I have cut out acidic food almost entirely but if it helps even just a little bit it will be worth it. Thank you for your comment.

  2. Jill Brice

    It’s really worth investigating if you have an embedded infection, also known as a biofilm infection. The bugs hide in these structures and are safe from antibiotic and immune attack. They are the reason so many standard urine tests come back negative for bacteria. There are 2 specialists in the UK who understand these type of infections. They use much more sensitive methods to culture specimens and can grow the pathogens causing the problem. Once identified the right treatment can begin. The treatment is long but it works. General urologists and GPs have not caught up with the research and most are unaware of these type of intractable infections.

    1. Abbey Haigh

      Hi Jill, thanks for your comment on my article. Is there any chance you could provide us with the names of these specialists? Unfortunately I can’t afford to go private or I would have done so by now but here’s hoping that with some names I might be able to push for a GP referral.

  3. Tina

    Perhaps having sex so young triggered some of your pain further? At 21 and with all these health issues sex shouldnt be a downer or a concern. Focus on getting better first and do other important enlightening things besides publishing a self pity article. If you’ve surrendered to the pain and diseases completely then no one can help you. Healing goes beyond the medications & isolating yourself only makes things worse. Anyways its difficuly but youll learn to accept this fate and live life again. If this upsetted you, im not sorry, your bound to reasd/hear it one way or another. Tes, we share similar illnesses and age.

    1. Cait

      If you feel like someone may take offense to your comments–you shouldn’t say them. It’s called compassion and its a characteristic of being human. Speaking of being human. Humans engage in intercourse. Its how we create life and a huge part of any persons well being. So it is a downer and is a concern when it can’t be done.
      This “self pity article” is a woman who is reaching out to people, telling her story and hoping that it resonates with someone, which it obviously does according to the previous comments.

      Anyways its difficult but you need to learn to be more polite and you’ll live a more human life.

      And I am TRULY SORRY you were not raised better to understand when someone is in pain and when to be silent.

    2. Abbey Haigh

      Hi Tina, I was 16 when I first had sex which I think is the norm nowadays. I don’t think that sex triggered the problem for me. I can link a few things that probably didn’t help such as frequent swimming in chlorine filled pools or over washing but nothing significant. I didn’t write this article for pity, I wrote it to raise awareness and get answers and to help others like myself. Depression is an mental illness which I can’t help having nor can I just stop myself feeling the way I do but I am pro actively trying to make myself better and live a better quality of life from day to day. I hope that one day you too can be symptom free

  4. Zaynah rujak

    Hi

    I know exactly how you feel. Everything you have written makes it easier to handle my condition that i know someone else is going through the same thing. Sorry it took so long for them to diagnose you.

    I had to quit my job, my social life at uni was not great, has your doctor tried botox injections? To help. It does help to go out sometimes, with mates as long as you know there is a toilet, having fun helps with the depression.

    I really hope you get onto the nursing. If you need anyone to talk too, you can always email me.

    Its great that someone has helped to raise awareness.

    1. Abbey Haigh

      Hi Zaynah, I’m glad that you feel like you’re not alone and even though it sounds like it was a struggle I’m happy to hear that you managed to go to university. My doctor doesn’t want anything to do with my IC and refuses to discuss/prescribe anything without it first being run past my consultant. The problem is I have only had two appointments with my consultant and even then it wasn’t the consultant himself it was his registrar. I mentioned Prelief to him as it was suggested to me by other IC sufferers and he didn’t even know what it was! I have been re prescribed bladder installations and I have to wait for an appointment through the post for them. He won’t try anything else until I’ve had a full course of the bladder instillations which is frustrating. I will try and mention botox injections next time I have an appointment, what exactly do they do? I would love to talk more with you, if you leave your email address I will message you.

  5. Julie

    Hi Abbey,

    I am sorry you are going through this at such a young age. My first symptoms appeared at age 24 and my niece was diagnosed at 21. Unfortunately not much is understood regarding IC. I went a natural route because I had a bad experience as a child. I found a some great books by a woman named Catherine M. Simone. She too suffered from IC. I have been able to greatly reduce my symptoms over the years. I have spoken to probably over a hundred women with IC, some have had success with conventional western medicine and some with natural. You will have to make the decision you are comfortable with. When I have had bad flares in the past I would use an herb called marshmallow root and put it in boiling water for a few minutes. It was so soothing for my bladder. I also avoid certain foods, for me they are some of the high allergy foods, like nuts, milk, eggs. I also stay away from processed meats with nitrites, and msg. I hope you find some things that help make you comfortable and relieve your pain. It really depends on what it causing the IC symptoms for you. Some women have allergies, or pelvic floor problems from trauma, childbirth, surgery. I have heard of women getting better with long term ABX and some get worse. Some have treated candida with success. Some women have hormone imbalances. Just keep looking for answers and do not do anything you are not comfortable with. Don’t let anyone tell you it is in your head. This is real condition that women (and some men) struggle with. Godspeed!

    1. Abbey Haigh

      Hi Julie, thanks for your lovely message. I have tried going down the holistic route with Reiki and acupuncture with not much relief. However I would like to try herbs and I’ve never heard of the marshmallow root before but I’m willing to give it a try! I have got a very bland diet already and like you I try to cut out things like milk and eggs. It’s nice to hear that through elimination you’ve managed to greatly reduce your symptoms although it sounds like you’re still having flare ups now and then. Do you think these are due to relapses in your strict diet or is it something else that causes them? I suppose that’s a silly question because most of us will probably never know but if you do I’d like to hear what it is for you. What is ABX? I haven’t heard of that either. There’s probably so much out there but it’s not all in one place for us to tick off like a check list! I hope you carry on your road to recovery and I’m happy to hear you’re doing it naturally!

      1. Julie

        Hey Abbey,

        So I did not have a lot of success with most natural things. I try to eat a healthy diet and not as restricted as the recommended IC diet. I do stay away from citrus and drink mostly water and only decaf coffee and tea. I have tried acupressure, that helped with other things but not the IC. I had all my silver fillings removed by a holistic dentist, which also helped my overall health but not the IC. ABX is abbreviation for antibiotics. Some women think their IC might be caused by a low level infection. I tend to lean in the camp that it an autoimmune disorder. I have followed the research of Dr. Susan Keay at the University if Maryland. Dr. Keay has isolated a peptide that is present in the urine of IC patients. The research is suggesting that either our bodies are destroying our bladder linings or preventing us from making a sufficient one. There is another group of researchers who are working on a urine test that will look for this peptide so people can get a quick and decisive diagnosis. I believe there is a oral medication called Elmiron that some women find helpful. I started to present symptoms when I was 24 after having some minor surgery, my niece was 21 when she started to have symptoms after a bladder infection. I know women who started with symptoms after having a baby. I do not think any of these things cause IC they are just a stressor that may help to bring it on. When I first started having symptoms in 1994, not a lot was understood and most doctors did not believe IC existed. Things are much better now. I pretty much have symptoms all the time but they are mild and I am developed a tolerance for them. In 2001 I had a moderate flare and started looking for sone things to help. That was when I found another women, Catherine Simone, with IC who wrote the IC books, Along the Healing Path. Catherine was very sick and was able to resolve a lot of her problems. This is not a typical result, but she was always helpful to me, I have spoken to her on the phone and through email. I think she has a DB page, her group was IC Hope. The things that helped me the most was the marshmallow root when I was have more moderate symptoms and trying to get the best nutrition and quality sleep. Also, gentle yoga for stress relief. I just wanted to stay away from chemicals, so I refused any things being put in my bladder by the urologist. They sometimes use certain chemicals to destroy the lining in hopes it will rebuild on its own. I just didn’t want to go that route. However it is up to you, and you should ask lots if questions and do what you feel comfortable with. Let me know if you have any other questions or concerns. Best, Julie

  6. Zaynah rujak

    Hi Abbey my email address is [email protected]. Yeh they make you have the installations before they try other options. Maybe try a different doctor if your one doesnt really understand, it helps to go in with the information when seeing your doctor so they can not really dismiss you.

    The botox injections relax the muscles in the bladder to reduce the pain, and the amount of times you pee.

    Zaynah

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